San Diego, CA May 21, 2019 — Yesterday, at the Digestive Disease Week (DDW) meeting in San Diego, researchers from the pharmaceutical company Takeda and the Celiac Disease Foundation presented a study entitled, Adherence to the gluten-free diet and celiac patients outcomes: real world evidences from an international patient registry, iCureCeliac®.  (DDW is the world’s largest meeting of physicians, researchers and industry in gastroenterology and related fields.)

iCureCeliac is an online patient-powered research network hosted by the Celiac Disease Foundation that now has more than 6000 members. This research study included 552 patients with self-reported biopsy-confirmed celiac disease who completed the Celiac Symptoms Index (CSI) and Celiac Dietary Adherence Test (CDAT) surveys. Researchers measured patient demographics, disease characteristics, diagnostic journey and outcomes, diet compliance, symptom burden and quality of life. The research findings reported include:

  • 24.1% of patients report low disease symptom burden. 30.1% report high symptom burden.
  • Although 96% of patients believe they are sufficiently adhering to a gluten-free diet, as measured by the Celiac Dietary Compliance Test (CDAT), half are not.
  • Among the half who are not sufficiently adhering to a gluten-free diet according to the CDAT, more than 50% report high symptom burden, poor quality of life, and missed, on average, 5 weeks of work or school a year due to illness associated with celiac disease.
  • 74% of all patients report accidental exposure to gluten in the last 30 days.

This research further documents that sufficient adherence to a gluten-free diet is difficult for most celiac patients to manage, and even when a gluten-free diet is sufficiently adhered to, many continue to suffer from high symptom burden, poor quality of life and productivity losses. If this includes you or a loved one, please know that you are not alone. This is why we at the Celiac Disease Foundation are devoting enormous energy and resources towards finding alternative treatments to the gluten-free diet, and a cure, including building the iCureCeliac research network and actively participating in, and directly funding research.

Add your data to our iCureCeliac® patient registry today. iCureCeliac® is a free online portal for patients, or their caregivers, to provide critical insights into life with celiac disease. Your participation will help create better diagnostic tools and treatments for cross-contact and gluten consumption, governmental policy changes, and access to new and innovative clinical trials nationwide, which may, one day, cure celiac disease.